I didn't realize N was drinking regular milk. The three of us were sitting at the table and X was eating oatmeal (which is a huge deal) when X grabbed N's glass of milk to take a drink to be funny. N went into panic mode and was yelling "No!! Don't drink it!", and I was all "What's the big deal? You were done drinking it." N yelled, "But it's regular milk!". I reached towards X, but it was too late, he had already taken a drink.
I almost threw up. Poor X started crying "Momma! What's going to happen to me?! I'm scared! Do I need a shot?!" (referring to his Epi-pen) And he turned beat red immediately (an allergic reaction). I told N to find a container for N to throw up in and I ran to get the Benadryl and a syringe to put it in his feeding tube. X was crying and screaming, "I'm scared Momma! I'm scared!", over and over. By the time I had the Benadryl in his tube he started throwing up. Oh, did he throw up. (Did I mention Craig had ran to the store and I was alone? Thankfully he had forgotten the list and had to come home, so he arrived right after X threw up)
X was also telling me that he couldn't swallow his spit (a sign things are swelling). Because he threw up right after I gave him the Benadryl, I gave him some more. I wasn't sure on the dosage, so I guessed and gave him less than what I had previously given him. This time I gave it to him in the j tube (goes into his small intestine). He complained of not being able to swallow his spit for a few more minutes, and then seemed okay. He was red for quite a while, but he fell asleep on the couch with Craig and was fine. I was beginning to seriously think I was going to need to use the Epi-pen. )I had gotten it out, but hid it so X wouldn't see it. I've never had to use it before and that is the first time I've actually thought about using it.
He was exposed to milk in Feb at the hospital and he threw up then and turned bright red, but the reaction didn't seem as severe this time. I think that each time he is exposed like that he will have more severe reactions. Which is scary if that is true. My plan for a stress free, fun evening before his procedure definitely did not happen.
Poor N, he thought it was all his fault that X drank his milk and X was saying it was his own fault because he shouldn't have drank N's milk. It took quite a bit of convincing before N truly believed it wasn't his fault. He came to the conclusion "Mom, I guess it just happened. It's nobody's fault". X, on the other hand quickly jumped to the conclusion that it was my fault. I was happy to take the blame.
Today we started the bolus feedings. The GI doctor wanted us to run 200ml of formula over an hour into X's stomach, the nutritionist suggested 150 ml over an hour, so I started with 100 ml over an hour. That went well, so I upped it to 120 ml over an hour for the second bolus which also went well. I upped the third bolus to 130 ml and that went well. For the fourth bolus I did 130 ml at a rate of 140 ml an hour. X started feeling tired and wanted to lay down about half way into the bolus. He also had dark circles under his eyes. It was near bedtime, so that could have been what was going on, or it could have meant he wasn't tolerating it all that well. That's what would happen with his feeds in Feb when he was hospitalized. He would get that way before the retching started. When the bolus was done he seemed a little perkier, but still had the dark circles. I'm still not sure what was going on. He said his tummy felt fine. I think I'll stick to 130ml an hour tomorrow and stay there for several days before moving up.
One of the benefits of starting the bolus feeds this time of year is that we aren't at the beach all day and we are doing school, so we are home more often. The hard part is that cold and flu season is coming up. If X throws up now, he can throw up formula and lose calories. Hopefully we can keep him healthy. Time to start the extra vitamin C and D.
It is also more work to get these bolus feeds in. There is a lot of timing involved. Today we had a lot of beeping with the feeding pump and lots of leaks. X was so active he often knocked the cover off one of the ports and formula went everywhere. I can't tell you how many times the alarm went off or he leaked formula in his " fortress". He would just slide his little feeding pump backpack out the "door" for me to fix the alarm.
We will definitely need to adjust to this new feeding schedule. I am so grateful that today went well with the feedings though. I was extremely apprehensive about today, because when we tried this last year everything fell apart. X dealt with throwing up and popping issues for at least 4 months. It was awful. But that was last year, and we understand his system a little better, so hopefully this will go better and we can get to the process of weaning him off this tube soon.
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